Posts Tagged ‘support system’

Yesterday, I updated my Interstim Device programming. Since having the device put in the second time, I’ve gone back and forth to the office to achieve more optimal programming. Knowing that my first device worked so well has encouraged me to not settle for “less than great” relief of my symptoms. It’s been a struggle to have, then lose, then have, then lose the ability to control my bowel symptoms. This cyclical life that I have been living for the past seven and a half years is overwhelming at times. However, I am remaining positive that this time, with this programming, a difference will be made in my bowel control.

My device has been reprogrammed. I am reprogramming. Not only my device, but my mind and body as well. I am encouraged that my device “feels” more optimal after this last set of changes. (time will tell). I am doing all I can with diet and exercise to support the medical technology within me. I am beginning to blog again, hoping to offer support in an effort to remember that my story is not mine alone.

Almost a year ago, I published a post called, My “Adult” Movie. In this post I discussed the event of Medtronic producing a video about me in an effort to educate people about, and put a real face to, fecal incontinence. Although it’s hard to watch myself, I am proud of the message I am able to portray in parts 1, 2, and 3 of my story. I am linking the videos to this blog to allow others to easily access this information. In addition to my videos, there are many other helpful videos that were made at the same time, talking about different facets of Interstim. These can be found once you view the videos I’ve linked below. They will be in the sidebar. I encourage anyone who wants further information about my personal story, or further information about Interstim, to take a look.

Last year, I was approached by a woman very interested in my personal journey with my Interstim device. This amazing woman, Jennifer French, has co-authored a book about individuals and the way that neurotech medical devices have enhanced their lives. I am one of those individuals. Feel free to check out the press release and the book! Thank you, Jennifer, for telling my story.

As you may have noticed, I have taken an extreme hiatus from chronicling my life and progress on my blog. For whatever reason, be it moving houses , start of school year, 2 darling children that want their mother all the time, or starting a new job, my blog has been neglected, severely. Regardless of the reason, I have found lately, that it’s been all too easy to ignore this part of my life. Until today.

Today, two very important things happened in my life.

1. The bubble I’ve created around myself, the bubble that has existed as one of joy and wholeness from a fully functional Interstim device, has been shattered. Sadly, while doing a seemingly uncomplicated water aerobic move I felt a snag, then a jolt, then a series of shocks in the area of my implant. Upon further inspection, which included a week of me messing with programming, I realized today through x-ray images that my wires have moved. The incontinence is BACK, the pain of a failing implant is severe, and my mood is sour. Fortunately, all was handled expertly by my Medtronic Representative and rectal surgeon who have assured me that swift surgical repair of the wires will restore my functionality. Additionally, reprogramming of the device until surgical repair has offered some sense of relief. And I realized, this is why. This is why I need to continue to chronicle my own journey. The incontinence never goes away. This is a chronic problem. A chronic problem with a wonderful solution (Interstim), but a chronic issue nonetheless, one I will struggle with, for the rest of my life.

2. Today I responded to 2 e-mails. E-mails from women who have sustained incontinence as a result of nerve damage. Women who are happy that they have found my blog in their quest for validating their own journeys in unfamiliar and terrifying territory. And I realized, this is why. This is why I write my blog. My blog offers me solace, and it offers other people a hopeful message, an understanding, and peace while dealing with incontinence issues, mental illness, and birth trauma.

And this is why, why I will continue to write. Thank you for today, in validating my purposeand the purpose of this blog.

99 Calls. As of next week, including my scheduled calls, I will have placed 99 calls as a patient ambassador for Medtronic. In a little less than two years, I have spoken with 99 people regarding my experiences with Interstim. 99 “official” conversationsabout fecal incontinence have been expounded upon in an open and honest manner. 99 conversations that, prior to 2008, I could have never imagined having. 99 conversations that, on average, are 30 minutes a call, that’s 2,970 minutes, 49.5 hours, a little over 2 full days of talking about an issue that is stigmatized, traumatizing, and devastating to many people.

Modesty aside, I can say, I feel good about that. I feel great that I am able to do something, able to help people at the time where they are questioning their future with fecal incontinence. Able to alleviate fear and provide a sounding board for life’s stresses with fecal incontinence. I feel as though I am providing a service that I so desperately craved at my time of decision, at the time where I was wallowing in the woes and uncertainty of a future filled with severe fecal incontinence.

The most amazing thing for me, however, is that 99 calls is just the tip of the iceberg. The bowel disorders support group that I facilitate, the multiple e-mails I negotiate from my blog, and the conversations I have with people face to face all serve to get my story out there in an effort to let people know they are not alone! To date, this blog has been viewed over 17,500 times. It is hard for me to even wrap my head around that number. It is hard for me to imagine that those 17,500 + views have hopefully helped someone by educating them about my experience and hopefully provided empathy for the viewer’s individual experience.

I am grateful for the opportunity to share my story, and I invite you to pass it on.

Sometimes, and often by well-meaning individuals, I am silenced from telling my birth story to others. When in the room with certain individuals and a newly pregnant mother-to-be, I am sometimes told, “Don’t tell her your story, you might scare her.” Aside from being condescending to my entire being, that statement is one that is pretty much in tune with the way things can be in the birth world.

The truth is, I “might” scare her, but more importantly, I “might” educate her about very real issues that were a result of childbirth for me, and, potentially, could be a result for her. Too often, we paint childbirth as a time to be strong, to be courageous, to be natural…when we really need to paint childbirth as a time to be educated. Not only do we need to be educated about the choices we “want” to happen, but the choices that “may” happen during the course of a child being born. It is not enough to research and only validate one set birth plan. It is not enough to think that nothing else will happen, simply because you are “strong.” You need to be educated, educated in all possibilities, not just the ones that you think, or desire, to happen.

Sometimes, people like to qualify my birth experiences, often pointing to different points in my birth story as the “why” to “what went wrong.” The truth is, I was not educated enough before going into the birth of my first child. Sure, I had read EVERYTHING I could about childbirth, had attended birth classes faithfully, brought a list of questions to each Doctor’s appointment, engaged in conversation with my colleagues, friends and family. But, that wasn’t enough. Because the pervasive societal push is for natural, unadulterated, childbirth, omitted in mainstream literature are the gritty, nasty, true, and possible emotional and physical ramifications of a birth gone awry. Too often, these stories are looked at as outliers, and sometimes even, scare tactics, where mothers are blamed for choosing too many interventions, or babies are blamed for malposition.

Yes, I might scare you, and if I do, good. Maybe then you’ll seek to find out more.

At our most recent support group, we discussed living with chronic disease. Our guest speaker, a mental health professional that focuses on chronic disease, was extremely helpful in guiding our conversation. I guess it’s difficult for me to think of my condition, of fecal incontinence, as chronic disease. However, as with most bowel disorders experienced in our support group, the waxing and waning of symptoms throughout my life would define it as such.

Chronic disease and it’s impact on mental health can be severe. As I have shared before, mental health professionals and therapy were pretty heavy components in my healing journey from both the physical and mental ramifications of the birth trauma. In dealing with a condition day after day, a condition that is chronic, one needs to supplement their mental fortitude with strength from others as well as within. It’s not easy for me to know that I will be fecally incontinent for life. However, the facts remain that my sphincter is damaged, and without medical intervention, like the Interstim, I would be completely incontinent of feces. The fact remains that to this day I have good days and bad (mostly good), as well as a medical device that contains a battery that will have to be changed throughout my lifetime. The fact remains that I continue to have diet modifications, as well as, pelvic floor exercise suggestions that I am supposed to follow on a daily basis. The fact remains, I am living with a chronic disease, that, although manageable, can alter both physical and mental outlook.

So, what do you do when you realize that you are living with a chronic disease? According to our speaker, the number one realization that you need to make is that your mind and body are connected. So, even though your mind isn’t “causing” your physical body ailment, your mind can alleviate some of you physical symptoms, or in turn, make them a lot worse. Emotional distress can be the very thing that contributes to chronic disease symptomology getting physically worse. By recognizing this fact, often in treatment, one can pay attention to emotional stressors, thereby problem solving and potentially increasing tolerance for the emotional distress so as not to have it manifest itself physically.

Too often, our anxiety about a chronic disease creates a negative feedback loop that, in turn, creates real physical problems, exacerbation on the underlying chronic illness. It is only in recognizing this phenomenon that we can continue to heal our minds, in an effort to live with minimal disruption of chronic disease.

Recently, I came across an article about a woman who lost her job due to incontinence. The headline reads: Opera Singer Can’t Stop Farting After Surgery, Loses Job. The woman, who suffered a botched episiotomy at childbirth, now endures incontinence issues such as uncontrollable loss of gas and feces. She is suing the hospital due to loss of control, and subsequently, the inability to perform as an opera singer, her occupation. As someone who also, ultimately, had to leave her chosen profession due to incontinence and birth trauma issues, I relate to this woman on a very personal level. I applaud her ability to pursue legal action, and I admire her for going publicwith this very real, and very embarrassing issue. I was initially introduced to this story via my Facebook feed, but then dug around for other news outlets carrying the story. Largely listed under, “weird news,” and on the news feed “gawker,” I now find this story to be listed in the media as a joke. Well, guess what, it’s just not funny. Nor, is it “weird news.” The fact that the media needs to portray an article like this under “weird” eliminates it’s ability to become a mainstream health issue. Furthermore, the comments listed as a response to these articles are largely littered with middle school level jokes and puns about poop, farting, and loss of control. So, congratulations media, for making a mockery of a very real problem for a lot of women, and also, creating an outlet for those wishing to relive their middle school years with crude wisecracks. I’m not laughing.

Living with a bowel disorder is not easy. In fact, it can be downright awful at times. Besides the obvious physical discomfort, emotional stress is rampant. As an ambassador for those suffering with fecal incontinence and a support group facilitator for those with bowel disorders, the theme of negativity around incontinence is a prevalent one. In fact, I urge you, if you are NOT suffering with incontinence, to imagine a day when you may be. Can you imagine how incontinence would impact your daily life? I wrote about my experiences in-depth in this post here. Can you imagine how leakage, urgency, physical pain in the rectal region, would change your outlook on your day to day, hour to hour, minute to minute happenings?

Remaining positive when dealing with your own bowel disorder is difficult. Oftentimes, bowel disorders lead to increased isolation, as the individual suffering refuses to share such personal information, and/ or feels uncomfortable leaving familiar areas. Often, people go years, even decades, before opening up about their incontinence to anyone, including health professionals. This suffering in silence wears down a person, physically and mentally.

It’s time, as a society, to stop being afraid of talking about fecal incontinence. Let’s not allow “pooping your pants” to be a punchline. It’s time to create a safe space to identify, share, and discuss incontinence. Only then, will people truly seek the treatment they need, and deserve. And, guess what, I don’t mind starting the conversation.

This weekend, a story came to my attention that left me emotionally devastated. You can read the story in its entirety here. The story highlights the birth of baby Olivia, who, following a rather tumultuous attempt at a vaginal delivery, was delivered via forceps. Because of forceps’ placement and doctor’s skill, or lack thereof, Baby Olivia’s skull and spine were broken, leaving her on life support for 5 days before she passed away. Reading this story, I can only imagine the horror and anguishthat this family feels. I can only imagine that the mother, whose body must be broken and battered from a botched forceps delivery, and whose daughter is lost to her, now has to cope with both physical and undeniable emotional pain. I can only imagine how the father, who witnessed the botched delivery, and lost his little one, will live with that emotional anguish.

I can only imagine, and reflect, on my own experience with forceps delivery. Like the mother in this sad story, c-section was pushed to the back burner. Olivia’s mother, in fact, asked for a c-section, prior to admittance to the hospital, and was told that “she’d be left with a scar.” After 3 hours of pushing, I too was told that a c-section would leave me with more physical baggage then a forceps delivery. I think, too often, that people underestimate the very real dangers of forceps delivery…in part because we are not warned of the horrors of such a delivery. I have yet to read a story of, “my wonderful forceps delivery.” I have yet to meet a woman, who delivered via forceps, with a glowing review to such a delivery.

Like Olivia’s parents, I maintain that forceps deliveries should be banned. My thoughts are, if you get to the point in a vaginal delivery where your body is just not ready/responding, then go for the c-section. In fact, my thoughts are, if you need any sort of intervention, including induction, you may as well go for the c-section. Although my thoughts may be unpopular, they are rooted in my own experiences, and in the experiences that I hear about from others who struggle on a daily basis with birth trauma.